General Chat

All my children and myself had ECG's and were fine, good I thought, until the specialist said that tell's us nothing-from history-there is definitely a heart defect in the family, and so we must next have heart scans, and after that more tests, could take a year, but they said they will find out the cause. And so we wait, but at least now my two Sister's that did not want the test have agreed to have it because they will not check the Grandchildren unless they find a defect in one of us...I have to check my family tree and give them any young deaths for the past two generations, and there are quite a few. Thanks for all who e-mailed me-helped tremendously. Love to you all-Jennifer.

At least things are moving forward Jennifer. Gonna take some time by the sounds of it though. thoughts with you love. catherine xx

Love to you Jennifer, You are a brave lady, Caz xxxxxxxxxx

Thanks Catherine, and Nyvene, the worst part was after waiting two hours for the results, I sat before the specialist and looked at my Children and thought who has got it-horrid.-Thanks for being there-really appreciated.

Jennifer Try and keep positive - if they can identify a genetic physical weakness, they will be able to keep an eye on you all and perhaps do something to rectify. My heart goes out to you and your family, but especially to those who have some genetic defect for which there is neither cure nor hope. Jay

Thanks Janet

No words can express how I feel for you, so sending you and your family .((((((((((((((HUGS))))))))))))))

Thank you Sunny, need all the hugs I can get.

I had to have my daughter tested for a genetic condition some years ago and that was bad enough with one child, one test and for something that could be managed. My heart goes out to you and your family. I am sure you know you are being a great mum and doing the right thing even though it is so distressing for you all. May you minds all be put at rest after the tests so that you can lead worry free lives. Take care Jacky x

Thank you Jackie-we just wanted a reason for Stephen's death-now we have to wait even longer to know-although they say SADS it will not help us understand until we find out the exact cause and stop it happening again-just been through my family tree at the request of the hospital-and so far, after half hour of checking I have 11 who died under 60, most of them a lot younger-makes you think how long this defect has been around.

Well Jennifer, as you say, it's going to take a while before you get to the bottom of it. Hope they will be keeping an eye on you all. Have they offered any kind of counselling 'cos I think I'd need it if I were you. Hope you get some sleep tonight as well. God bless. Luv, Margaret xx

Jennifer From what little I know of SADS, one identifiable cause is Long Q-T syndrome. If any of your family are diagnosed with having a genetic marker for this, then you can be easily treated with medication. Sadly, this syndrome is rarely recognised until several members of a family have suffered early deaths. Thinking of you and your family. OC

Thank you all for your replies on here and also e-mails, no I have not been offered any councelling over Stephen's loss or coping with this but you all on here are a great tonic. So thank you one and all- Jennifer.